Congenital heart disease (CHD) – being born with a heart defect – is the most common birth defect in the United States affecting one out of every 120 babies. Because of major advances in medical and surgical care, more than 90 percent of these patients are living into adulthood. Today, there are more than one million adults living with CHD, and less than 5 percent of them are receiving the specialized cardiac care they need.
“Many times when we do see adults with congenital heart disease come back to care, it’s during a crisis situation,” explains Curt Daniels, MD, cardiologist and director of the Adult Congenital Heart Disease program at Nationwide Children’s Hospital. “These adults come back with heart failure, or with an arrhythmia [abnormal heart rhythm] that could be life threatening.”
Dr. Daniels, also an associate professor of Cardiology at The Ohio State University College of Medicine, and a team of physicians in The Heart Center at Nationwide Children’s Hospital recognized the need for a seamless, gradual transition for their adolescent CHD patients and through the Adolescent and Adult Congenital Heart Disease program, developed the Transition Program – a patient education program that aims to successfully transition adolescents to continue specialized cardiac care.
Physicians believe that these adolescent patients are simply not continuing their care to adult congenital cardiac clinics for several reasons. This often occurs after 18 years of age when many patients leave their parents’ home for work or college. Pediatric cardiologists are trained in CHD and understand the anatomy and special needs of children born with heart defects. Adult cardiologists receive little or no training in CHD. As these patients become adults, they may develop new problems and should continue to be followed by a congenital heart specialist to keep their heart healthy.
John Wheller, MD, cardiologist at Nationwide Children’s, believes that parents play an integral role in helping to educate their child with CHD about the importance of life-long care. “I have worked with many of our current adolescent [congenital heart disease] patients since childhood. With the Transition Program, I know that they will not be lost to such care once they move away from home and enter the next phase of their lives.”
The Transition Program at Nationwide Children’s targets patients 15-17 years of age. It provides education regarding the importance of life-long cardiac care and an understanding of critical lifestyle choices to consider as an adult living with CHD including exercise, career/job counseling, medication coverage, health and life insurance, symptoms of concern, nutrition, local and national support groups and psychosocial issues, etc. The time at which a patient is transitioned to an adult congenital heart specialist is up to the cardiologist and the patient. There is no set age as every patient has different circumstances and may need more time than others before changing physicians.
Nationwide Children’s is also partnering in a first ever, multi-center study of adults with CHD led by the Adult Congenital Heart Association (ACHA). The two-year study, funded by the National Institutes of Health, will seek to determine why these patients become lost to care and how best to reach out to them.